Boehringer Ingelheim Uses Fashion To Highlight Experiences Of Patients Living With Rare Skin Disease

Boehringer Ingelheim highlights the experiences of patients living with generalised pustular psoriasis (GPP) through fashion at the World Congress of Dermatology. Mannequins in the collection are made from shards of glass, paper, knives, and razor blades.

SINGAPORE, July 25 – Boehringer Ingelheim recently hosted a media tour of The Unwearable Collection, a four-piece art collection that brings to life the physical and emotional burden faced by patients living with generalised pustular psoriasis (GPP). 

The Collection, launched at the World Congress of Dermatology Singapore 2023, was part of the pharmaceutical company’s efforts to generate more awareness and understanding of the disease through education and art.

First launched in the United States in 2022, the Collection was created by internationally renowned designer, Bart Hess, in partnership with Boehringer Ingelheim. 

The creative direction of the Collection is inspired by firsthand experiences Hess heard from GPP patients themselves. Made from raw materials like shards of glass, paper, knives, and razor blades, each mannequin conveys a different aspect of the patients’ experience: the physical pain, the pain of isolation, the life-threatening nature of the condition, and the intensity of a flare.

“GPP is an under-recognized and under-supported rare disease. Boehringer Ingelheim’s goal with “The Unwearable Collection™ is to make the suffering of GPP patients visible to a broad audience. 

“The collection symbolises the devastating and unpredictable impact of GPP – both physically and emotionally. As a rare disease, GPP is often misdiagnosed and undertreated. It is our hope that by raising awareness around GPP more patients can benefit from better treatment”, said Dr Joerg Kreuzer, Head of Medicine, ASEAN, South Korea, Australia, and New Zealand, Boehringer Ingelheim.

GPP is a rare, life-threatening skin disease, which is distinct from the more commonly recognised plaque psoriasis. Patients with GPP can experience episodes of flares that greatly impact their quality of life and can potentially lead to hospitalisation with life-threatening complications.

“Unlike plaque psoriasis, GPP flares are characterised by episodes of widespread sterile, pus-filled blisters that can occur without warning and with or without any history of plaque psoriasis. It can also be life-threatening,” said Dr Colin Theng, president of the Psoriasis Association of Singapore and Councillor with the International Psoriasis Council.

“The disease is extremely rare. In Singapore, there are about 40,000 patients with psoriasis, of which, less than one per cent of these patients have GPP.”

Because the disease is so rare, health care professionals may misdiagnose GPP as the more common plaque psoriasis. On average, the journey to an accurate diagnosis often takes an average of five years, which causes the patient to experience several years of sub-optimal or even incorrect treatment. 

Frequent misdiagnoses mean symptoms are often treated as a contagious infection or plaque psoriasis.

“Living with GPP is a psychological, social, and emotional torture. Patients not only endure the excruciating physical pain when flares occur, but we also tend to withdraw from society to avoid being discriminated against,” said Emmylou, IFPA Ambassador and a patient living with GPP for 20 years.

“Often, our condition is misdiagnosed and not given the proper treatment, which can lead to complications that may even result in death.”

In partnership with the Fashion Institute of Technology (FIT) in New York, Boehringer Ingelheim also unveiled the fifth mannequin of the Collection at the World Congress of Dermatology Singapore 2023. 

The fifth mannequin symbolised the mental health impact of GPP symptoms, categorised by the unpredictability of flares, which poses a significant challenge for individuals navigating their personal planning and daily routines while living with GPP.

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